My doctor has agreed to let me self-inject b12 weekly, if I can find an NHS haematologist who can confirm that this dose is not toxic. NHS neurologists may also be acceptable.
I know this is like searching for a needle in a haystack! 😱
Occasionally forum members mention that their haematologist has recommended this dose. I think my doctor is trying to cover her back if the NHS Taliban query it. I am aware it could just be a ploy knowing that b12 specialists don’t exist in the uk, but I think this GP is genuine unlike the practice partners. ☹️😠
I am aware that names will have to be private messaged. Thank you, everyone, in advance. ❤️
Written by
newlandvale
To view profiles and participate in discussions please or .
I fully agree. Doctors are paid a lot of money to do nothing but look for excuses not to treat. Do you have the names of the neurologists who have sanctioned your frequent injections. If I can get this from a specialist, I can back GPs into a corner if they start been difficult.
I don't understand why it has to be an NHS specialist. They seem to be all in a cabal to deny care for this condition due to cost measures. It's very similar to only being able to be seen by an in-network doctor in the US, where the participating health systems strictly limit doctor's ability to write prescriptions for blood and other tests without being called up and questioned, where they must justify themselves, and where they feel that their job is on the line. In both countries, patients are fighting a losing battle. It's so distressing to dwell on, that I push out of my mind thoughts of what will happen to me as I enter old age, yet they still remain always there, not too far away. The doctors all seem to be acting in bad faith, due to money constraints in your country, and due to profits and greed in mine.
I wish to correct the heading of your post ! It should read “ Wanted : KNOWLEDGEABLE Haematologist !” Look you don’t need permission to self inject . You must realise that a huge percentage members on this forum are forced to self inject B12 in order to function and stay well . We get our B12 ampoules from reliable German pharmacies , and needles syringes etc from U.K.medical suppliers . I’ll send you information regarding this , which you will need if you can’t find a knowledgeable haematologist or neurologist .
If B12 is toxic if injected ( strange that it isn’t toxic if taken orally , even if taken in huge amounts?) why are hairdressers and beauty salons allowed to inject poisonous material ? How come the authorities don’t put a stop to such dangerous practices? It would be laughable if it weren’t so ridiculous and totally untrue … . I’ll send you the information that you need , in case it’s all too difficult to find a knowledgeable haematologist The cost isn’t high . I estimate about £2.00 for an injection, everything included . That’s less than a cup of coffee . It’s the cost of a nurse that the surgeries want to avoid . I won’t explain further , ………….
Thanks for your offer to help but I have been self-injecting for some years since they found MGUS (pre-myeloma) in blood. I am aware I don't need anyone's permission and an open with the doctor about this. I now want to go official, with uninterrupted supplies of unvaried quality. Doctor happy not to spend surgery nurse time/money on this, but wants her back covered from repercussions from NHS Taliban. Hence the need for the confirmation re "toxicity" from a haematologist. Doctor didn't specify NHS. I did - not made of money - but may end up going down that route.
Interesting about the advisory team. Useful if their interest is in the patients' interests but I would be wary of potential ignorance - even specialists demonstate extreme ignorance re b12. And, being even more cynical, will they also have one eye on the NHS purse strings??
you don’t need anyone’s permission to self inject. Just do it. My GP knows that I do. NHS frequency isn’t enough for me, or most people on here. I am in charge of my body, not my GP ( who is the best GP ever!).
My Gp wrote to a haematologist and they sent a message back saying not their job! I’m not diagnosed PA but have trouble absorbing B12 so was referred to Gastrology that diagnosed Gastritis.
Finding a suitable, helpful consultant is a job for your GP. The Medical Mafia closed-shop should be able to help themselves, so that's your GP's job, surely?
There's enough experience on here about B12 'toxicity' [or lack of it!]
There remains much co fusion. I've had my b12 script stopped twice by the optimising pharmacists. They seem to have a lot of power and apparrantly there's been mutiple meetings about my b12. Frankly THEY seem to be in charge these days not the doctors. And even the NICE Guidelines are not enough to convince them it's non toxic!! GPs are allowed to use private pharmacist companies which my GP Practise has done......they are faceless and non contactable. Their ignorance is stunning. The one that rang me found side effects such as heart failure on websites like medsave and careline.com.. Wouldn't listen to me and mow these SEs are all over my record. Neurologists do have the power to reverse this however. At the moment.
Yes! I was told by a medic that they have to prove their salaries are worth it.....so look for savings in everything. I have to have an annual review this triggers their pharmacist to review my meds and they will then trawl through your file to see why you are prescribed a medicine, how long ago it was recommended, whether it meets the nhs current criteria of prescribing etc...and the cheapest form they can find.
Even my GP recently said to me don't come to us about your repeat prescriptions you need to talk to our pharmacists! We don't deal with prescriptions! Somewhat stunned me... My GP surgery have outsourced their pharmacy service to a company elsewhere in the UK....its not easy to create continuity and no direct contact. I guess this is cheaper. Their original pharmacist was fantastic & had a good knowledge base....listened.
That's horrific Nackapan! 😮 My monthly repeats have all been refused. Alledgedly because I didn't pick them up from my pharmacy. But I did! I'm on monthly. So far have refused 2 monthly which I waa on before I moved. Thry dont put repeat dates on their system so u have to remember dates when u last ordered.
My b12 ampoules are prescribed daily....but issued every 2 months. Ie 56ampoules. Now daily but issue monthly ie 28 ampoules. I self inject. The new gp surgery wont issue my repeats every 2 months ...only monthly. Sorry if I confused you.
Lack of B12 and folate can actually cause heart problems due to high Homosistiene ( prob haven't spelt that right ! ) But you know what I mean 😹. Gp’s hands are tied firmly to big pharma as is all the NHS . Yikes really
Yes....tbh it doesn't feel like a 'National' Health Service anymore. At GP level it's become completely stifled by beurocracy and processes to the degree that unless you have a mainstream bog standard condition you are likely to be overlooked as you don't fit the pathways. I dont think GPs do Homeostane blood (spelling?) tests? They've never done one with me at least....lol
Do you mean with suitable labs - or by staff who will follow the necessary protocol to obtain an accurate result? Surely if a test needs a quick turnaround there should be a system in place for it.
So sorry to hear this. I was given the ME/CFS label which seemed to give doctors a get out reason not to investigate any further......it was actually undiagnosed hypothyroidism.....not diagnosed as my TSH didn't meet the nhs set criteria.
My tremors which were disabling were type labelled and deemed untreatable......actually were due to gluten ataxia and b12 deficiency. Years to get properly diagnosed. Whilst not cured have improved immensely since b12 jabs and gluten strictly excluded.
I can never find the original report, but search for 'Treatment with high dose vitamin B12 been shown to be safe for more than 50 years' from Stichting Tekort.
Every doctor on the planet should know this dose is not toxic. Lots of people inject every day or every other day. Much much larger doses are used to counteract poisoning with no ill effects. Check out the health risks for excessive B12: ods.od.nih.gov/factsheets/V...
If you are not taking any supplemental B12 and have a high B12 level, there are some serious health conditions that can be causing it, and these should be investigated. But it is normal for someone on injections to have high B12 because they are getting injections.
Just listened to Dr David Morris on You Tube. He has been GP and is based in Cumbria. He specialises in B12 deficiency and debunks the myths regarding toxicity.The information given seems thoroughly researched. He explains the science behind our varying needs for B12 and has re inforced my view that frequent injections are not damaging.
I have self injected with approval of my GP since the start of the Covid era. Done monthly until recently and has kept my PA symptoms in check. Now cancer, chemo and peripheral neuropathy have made me try EOD injections. I have advised my GP and Haematologist of this frequency saying I would continue my regime to see if improvement to PN happens! As I buy hydroxocolbalamin from Germany to supplement NHS supplies, thats my business!
Although it doesn't state for how long treatment will be daily, you can't imagine they would go to the trouble of teaching people how to do this if it was just a week or two. And it clearly states daily.
I am on weekly, prescribed and done at GPs, following advice from Adult Inherited Metabolic Diseases Clinic at Salford, if that is an option.
I think the Metabolic lot went for weekly as they do a joint ME/CFS clinic and they use weekly B12 for that (I found this paper which shows that people on weekly generally do better than people on less frequent injections for ME/CFS and Fibro, and I have a diagnosis of the latter as well as the B12 issue and small fibre neuropathy. You'll see it mentions people having been on at least weekly for sometimes 20 years.....)
Thank you again for the metabolic clinic, bookish. I to have ME/CFS and Fibro and I am aware of Regland's research. The NICE Guidlines ME/CFS rewrite chose to ignore this because sample size small and I am not aware of any follow-up. Covid probably got in the way, ironic since probably same thing! Been out all day so not yet looked at this clinic but will tonight!
I dont know if this will help you but perhaps refer your doctor to this article in the BMJ bmj.com/content/383/bmj-202...
the doctors who wrote this are not haematologists but unlike most Haematologists the authors of this paper they are specialists in Vitamin B12 because they are members of CluB-12 which is a global research, clinician and patient led think tank that actually knows what they are talking about based on research and real-life experience with patients. The section called What are the Harms? seems particularly useful and the point made under Shared Decision Making. Good luck!
I have not looked this up recently. Now checked & edited.
I believe that if you get cyanide poisoning or smoke inhalation the treatment is 5g of b12 in an infusion over a 15 mins. This can be repeated after 2 hours.
The ampoules we use are 1mcg so 5g is the equivalent of 5000 injections. If this is repeated some people could get the equivalent of 2 x 5000 injections over a 2 hour period. So far from being toxic it is one of our most potent detoxifying agents.
__________________________________
From bnf.nice.org.uk/drugs/hydro... with cyanides for Cyanokit®&text=Initially 70 mg%2Fkg (max,of poisoning and patient stability.
Listed under Cyanokit (the link should be from the "http through to stability., will edit once I figure out how..)
__________________________________
Whereas under Hydroxycobalamin it says
Pernicious anaemia and other macrocytic anaemias with neurological involvement
for hydroxocobalamin
By intramuscular injection
Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
____________________________________
I think it is quite likely that the number of chemicals we are now exposed to causes us to have much lower levels of b12 than our ancestors.
Thank you to everyone who replied and especially those who dug out proof of b12 safety. Special thanks to bookish - I think you have cracked it! Providing a name and clinic all within a day's driving distance. Now feeling more optimistic. ❤️🤗
From the dear NHS's very own website, found within 10 seconds of searching ... so now GPs can't even do that 🙄 although it doesn't specify frequency to be fair (tap photo to show all relevant info)
Screenshot of NHS website confirming hydroxocobalamin may safely be injected long term
Thanks Myoldcat, but I would steer my doctor away from this information!
To quote: To see how well it's working, your doctor will ask you about your symptoms such as tiredness and lack of energy. They will also give you regular blood tests to monitor the vitamin B12 levels in your blood.
We all know doctors never listen to how the patient feels, and if they look at blood tests during treatment they panic 😱🤣🤣
Unfortunately there is no mention (of course) of "toxicity" and at what frequency this toxicity occurs so many doctors will assume above range is toxic
Thank you for looking into this as there is much information that would be useful when doctors try to switch PA patients to tablets only.
Eek, I didn't read that far ahead! Glad you did before sharing with your GP. There must be some good quality information on (lack of) toxicity somewhere...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can anyone recommend a good haematologist or Neurologist for pernicious anaemia
Doctor is going to write to the haematologist...
Horrendous Experience at Haematologist Appointment
Private haematologist in London - any recommendations?
NICE Guidelines re B12 & Haematologist referrals
